How do personal experiences of autism affect views of genetic research into autism?

Project: Other projectOther internal award

Project Details


In recent years genome-wide association studies (GWAS) have identified specific genetic variants associated with aspects of human behaviour, including autism. This raises important ethical and social policy questions about screening, inclusion, stigma and identity. In summer 2021, a GWAS was launched to study genetic explanations for increased risk of poor physical and mental health in autistic populations. The launch of this study led to such uproar and distress in the autistic community that it has now been paused. In our interdisciplinary, qualitative pilot study we will elicit personal autism narratives and explore how they relate to individuals' views about participating in genetic studies of autism, and about the prospect of DNA-based autism screening. We will also develop new, creative methods for including autistic participants in research that are sensitive to diverse needs. This will support our funding bid for a larger study at the interface of genomics, disability, social policy and ethics.
Effective start/end date10/01/2230/09/22